Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Longer Term Recovery - Neuro Setbacks

cristiana

Recommended Posts

cristiana Veteran
cristiana
Posted

This quesiton is for anyone who has recovered from neurological symptoms.

 

I often read on celiac posts online that neuro symptoms are often the last to clear up.  I am trying my hardest to stay clear of gluten but the neuro problems persist, two years gluten-free.   They almost seem to disappear, then start off again.   Same things - buzzy ankle, tingling fingers due to ulnar compression/carpal tunnel, which has been properly DXd, and facial buzzing and tingles.  

 

Are there any celiac veterans out there who experienced these setbacks?  Was it always gluten that brought these things back or did you have a hunch that other factors were at play?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


icelandgirl Proficient
icelandgirl
Posted

I'd love to know the answer as well. I am 100% gluten free. I haven't been glutened since March of last year, but I will have symptoms come up that are similar to before I went gluten free. It makes me wonder if we can have a flare up without consuming gluten.

GF Lover Rising Star
GF Lover
Posted

One thing to understand is that other things can activate the Auto Immune system.  Stress, sickness, other AI issues can all activate it.  This in turn can cause some, all or different symptoms to pop up while the AI system is cranked.  Also, remember that perfectly healthy people have aches, pains, tingles, head aches, all kinds of things that just happen and cannot be attributed to any disease or sickness.  

 

I'm not trying to belittle anything any one person is experiencing, but, keep things in perspective.  Also, consider the fact that some damage from Celiac or any AI Disease may be permanent.  Don't think of this stuff as a set-back,  Sometimes the smaller things can be dealt with easier when thinking about your health overall.

 

Colleen

cristiana Veteran
cristiana
Posted
  • Author

Colleen - thank you so much for that reply, I find it v. reassuring.   Looking back the latest stuff came along with some stressful hospital tests, a new job and a nasty virus.   You have really helped me. 

 

xx

GF Lover Rising Star
GF Lover
Posted

So glad I could help  :)

icelandgirl Proficient
icelandgirl
Posted

I agree...very helpful and comforting reminder Colleen.

GF Lover Rising Star
GF Lover
Posted

Here is an easy to read article that explains things better than I.  It's good for all of us to keep in mind.  New (a year or so) Celiacs can obsess about all kinds of things that really mean nothing due to Celiac.  Some people start cutting back foods they eat drastically thinking it is Celiac related when it's not.  

 

The best advice I can give any Celiac is to look at improvements as a whole and realize some things need a lot of time to improve and other things may never improve, but you will eventually find your new normal and work with it.

 

Stay positive girls  :D

 

Colleen

 

Open Original Shared Link

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cristiana Veteran
cristiana
Posted
  • Author

Colleen - thanks so much for thinking to post this here.  It is very helpful.   :)

GF Lover Rising Star
GF Lover
Posted

I knew you would see it here.  Hopefully, Iceland Girl sees it too.  :)

icelandgirl Proficient
icelandgirl
Posted

Fantastic! Cristiana, you and I have discussed this cycle of stress before...good reminder.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,874
    • Most Online (within 30 mins)
      7,748
    MLBarden
    Newest Member
    MLBarden
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Gluten free Areds 2 Vitamins

      By Scott Adams · Posted

      If you need that designation you'll likely need to switch to a different brand. It's unfortunate that they don't add it to their label and test for gluten.
    • Michael P
      Gluten free Areds 2 Vitamins

      By Michael P · Posted

      Thank you for the reply  , I have tried the Baush & Lomb brand and did have a gluten reaction.  O spoke to the mfg and they state the same as many other mfgs.   - NO Gluten intentionally added to product , but they have no control ( they choose not to) over their suppliers of various ingredients  I am really trying to only take vitamins  that clearly state gluten free  
    • Scott Adams
      Diagnosed w Celiacs, but reacting to gluten-free Digiorno Pizza AND Kraft Zesty Italian Dressing

      By Scott Adams · Posted

      DiGiorno reformulated and have not been using wheat starch for a couple of years now, so this should not be an issue: https://www.goodnes.com/digiorno/products/digiorno-gluten-free-frozen-pepperoni-pizza/ It does contain other ingredients that may be causing you IBS-like issues, for example guar gum.  Many gluten-free foods and baking mixes contain xanthan gum or other gums like guar gum. Although they are both gluten-free, they may cause IBS-type issues in some people with celiac disease or gluten sensitivity:    
    • Scott Adams
      Alcohol

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery have additional food intolerance issues which could be temporary--wine and other alcoholic beverages might also fit in here. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      The patient is positive for DQA1*05, one half of the DQ2 heterodimer

      By Scott Adams · Posted

      I completely agree with you—celiac disease and gluten sensitivity are far more complex than mainstream medicine often acknowledges. The genetic component is vastly underrecognized, with multiple genes (not just HLA-DQ2/DQ8) contributing to susceptibility. Your point about HLA-DQA1:05 is critical; even ‘rarer’ genetic variants can have serious clinical implications. I appreciate the book recommendation—No Grain, No Pain sounds like a powerful resource, especially given the author’s bold stance against conventional dietary dogma. Your decade-long experience with a grain-free diet is inspiring and underscores how transformative dietary changes can be for autoimmune conditions. It’s frustrating how narrow testing and outdated guidelines leave so many suffering. Your work as a Functional Nutrition Counselor is so needed in this space.
×
×
  • Create New...